Lupus Society of Illinois
Connect with us!
  • Home
  • About Lupus
    • LSI Brochures by Dr. Robert Katz
    • What Causes Lupus
    • Symptoms
    • Diagnosing Lupus
    • Diagnostic Tools for Lupus
    • Treating Lupus
    • Warning Signs and Prevention of Flares
    • Working with Your Doctor
    • Lupus and Quality of Life
    • Pregnancy & Contraception for Women with Lupus
    • Research Highlights
    • Research & Treatments
    • More Lupus Research Information
  • Upcoming Events
    • February 2019 Support Groups
    • Illinois Lupus Walks 2019
    • 2019 Bank of America Shamrock Shuffle Lupus Charity Runners Team
    • Lupus Update Webinar
    • 2019 Chicago Spring Half Marathon and 10K
    • 2019 Bike the Drive - Lupus Charity Riders
    • 2019 Bank of America Chicago Marathon Lupus Charity Runners Team
  • Programs & Services
    • Teleconference Recordings
    • Financial Assistance
    • Individual Peer Support
    • Lupus Hero
    • Living Well With Lupus Story Sharing Project >
      • Living with Lupus and Medical School
      • The Lupus Voice Grows
      • Father's With lupus: A Son's Story
      • Still Alive: Kay Mimms, Lupus Warrior
      • There is Hope
      • Holiday Stress
      • Living with Lupus for 30 Years
      • A Mother's Journey
      • Mari Gonzalez: Chicago Lupus Walk Ambassador
      • Kerri Horan: Western Suburbs Walk Ambassador
      • A Brighter View
      • Coping with Lupus
      • Marathon Story - Courtney
      • Finding Comfort in the Uncomfortable
      • How I Met Lupus
      • 2014 Bank of America Chicago Marathon Lupus Charity Runners Team
      • I Am Still Alive
      • I Don't Have Lupus, Lupus Has Me
      • Attack of the "Itis"
      • Learning to Accept
      • Living with Lupus Since 1980
      • Marathon Story - Aaron
      • Marathon Story - Dana
      • My Lupus Journey
      • A Runner's Story
      • A Special Day: A Lupus Story
      • The Symbol That Represents Me
      • This is Our Story
      • One Runners Story
      • What Do You Mean I Have Lupus?
      • Yoga and Lupus: In Good Company
      • So...What Was That About Yoga?
      • Beyond the Mat
      • How LSI's Advice Got Me The Treatment I Needed
      • Lupus Advocacy Report
    • Lupus Community Navigator Program
    • Rush University Medical Center Doctors answer Lupus Questions
    • News You Can Use >
      • Lupus & Chemo & Cancer
      • Hair Loss and Lupus
      • When should I tell my employer I have lupus?
      • Diagnosis Disputes: What to do when one doctor says you have lupus and another says you don't
      • Illinois Rehabilitation Services
      • Medical Marijuana
      • Legal Issues
      • Lupus and the Lungs
      • Anti-Malarial Drugs and Lupus
      • Lupus Apps
      • Statewide Support Opportunities
      • Transportation
      • UV Rays and Lupus
      • Plaquenil/Hydroxychloroquine Prescription Costs
      • Prescription Assistance
      • Beware a Cure for Lupus
      • Dentistry: More Than Just Teeth
      • How to Find a Doctor
      • Lupus Tracker
      • Managing Infections for Lupus Patients - Highlights from Dr. Curran's Presentation
      • Resources for Men with Lupus
      • The Internet & Lupus
      • Window Tinting
    • Lupus Update with Dr. Katz >
      • About Dr. Robert Katz
      • Dr. Katz Explains Lupus Articles
    • Research
    • National Lupus Initiative
    • Focus Group Opportunity
  • About Us
    • LSI Team
    • Board of Directors
    • Lupus In The News
    • Medical Advisory Board
    • Lupus PFDD Meeting
    • 40th Anniversary
    • LSI Newsletter
    • Junior Board
  • Volunteer
    • Volunteer Application
    • Volunteers with Special Skills >
      • Program Assessment
      • English to Spanish Translation
    • #GivingTuesday Volunteer Survey
    • Achieving the Mission
  • Donate
But you don’t look sick.  

The good thing about lupus is frequently you do not look sick.  The bad thing about lupus is because you do not look sick, you do not always get the understanding, compassion, and support that you sometimes need.

Maybe you have had the same comment made the “but you don’t look sick” comment to you.  People seem to think that lupus sounds like a very complicated diagnosis, and you ought to be pretty ill if you have that disease.  But if you have lupus you know that the illness can vary quite a bit from major problems such as kidney, cardiovascular, central nervous system, and other internal organ manifestations to complete remission with no symptoms.  

Frequently people will have mild lupus with some achiness, fatigue, a tendency to have rashes, but nothing life-threatening.  Then their family members and coworkers will tell them, “You don’t look sick.”  That, of course, does not describe your energy level or how you actually feel.  A lot of things are not evident from appearance.  Things like kidney disease, the kind of achy joint problems that you may get as part of lupus, Raynaud's phenomenon where your fingertips turn blue or white, and other symptoms.  

What to tell people?  Sometimes it is better not to get onto the health topic because it is both personal and difficult to describe.  But if you really want to go in that direction, you could try attempting to quantify your symptoms.  How much fatigue (0 to 10) do you have?  How much pain (0 to 10) do you have?  Because pain and fatigue are subjective symptoms, only you can describe their intensity.  I often see patients who have fibromyalgia sometimes with and sometimes without lupus, and this is another diagnosis, which needs to be differentiated from SLE and it is treated differently.

Know that if you’ve heard “but you don’t look sick,” you are not alone.  Many people with different diagnosis have heard it as well.  In fact, there is a website called www.butyoudontlooksick.com, that describes the way lupus patients often feel.  
Lupus Society of Illinois
411 S. Wells Street, Suite 503; Chicago, IL 60607 | 312-542-0002 or 800-258-7872 | info@lupusil.org | CONTACT US
Serving Illinois Since 1973